Wednesday, June 30, 2010

some of Lucy's hair :(

Wed morning, 30 June

Feeling a bit technologically challenged - can't figure out how to get the right date/time thing on this blog. When I post a message the little time thing at the bottom of the screen is the right time, but when it's posted it comes up as having been posted about 12 hours before. Anyway, I'll try and remember to type the actual date/time in the post and you can ignore the one above the bit where I start writing. When I have a chance I'll try and figure out how to change it again....

Anyway, this morning Lucy is having a blood transfusion, and, depending on blood tests and everything else we may get to go home this afternoon! She is a bit grumpy and not quite herself this morning, so we'll have to see if that develops into anything. The oncology team nurse has been filling me in on details of the regular medications that Lucy is on (antibiotics, antifungal stuff, treatment for constipation), and how to look after Lucy's central line and what to do in the case of any problems with the line, and procedure if there are any worries about her health or she gets a temperature. Big thing to note I think is just call if you have any worries!! Thankfully there is someone available 24 hours a day so we don't ever have to wait or worry and feel on our own. Better put those phone numbers in my phone!

They also have a community nurse who can come to your home and help with doing the dressing over the central line if we need it. This is all good because yesterday when they were re-doing the dressing her poor skin under the sticky stuff was all raw and sore looking, so it's been changed to a daily gauze dressing which I'm just not feeling so confident about mucking around with myself.

Lots more hair is falling out today which is making me feel quite sad. I knew it would happen but I suppose it's just the knowledge that it really is happening to our Lucy, and that soon she will have that baldy look that marks you out as a person being treated for a form of cancer.

Talking with some other mums here on the ward I am aware of how hard it is to explain treatment and side effects and all that to children who are older. They have talked of issues their kids have had along the way like wanting to refuse chemo, absolute fear and phobia of needles (did you know there are psychologists who specialise in needle phobia?!), yelling at their parents or the staff and things like that. In those things I am grateful for the fact Lucy is a baby and we don't have to explain everything to her, and that whilst she doesn't like some procedures usually a cuddle at the end is all it takes to calm her down. Of course she's been so well, I'm not sure what it would be like if she was feeling really nauseous or something, but we'll cross that bridge when we come to it, and hope that the cuddles keep working!

Monday and Tuesday ended up busy days with a number of visitors, including a hit of tennis at Cumberland Hospital next door with lovely Lindsey F - Adam is just amazing at organsing things to give me a break and do some exercise! Most special was the chance to go out for dinner with Adam on Tuesday while Matt from church sat with sleeping Lucy and the other girls were tucked up at Nanna and Poppa's. Thank you to those kind friends who insisted on sponsoring our meal, it was wonderful! There is a very nice thai restaurant just down the road from the hospital if you're interested....

A month or so before Lucy was diagnosed with leukaemia we were enrolled in a course to learn about Down Syndrome with an organisation in the UK called DownsEd UK. Every Tuesday night at 10pm we log on and listen to a presentation about some aspect of development or intervention relating to kids with Down Syndrome (the course is particularly about children 0-5 years). It has been really interesting and informative, but in the last few weeks we haven't really felt up to it (no prizes for guessing why!).

Last night however I logged on and listened to a talk about motor development. As lots of you know kids with Down Syndrome usually develop more slowly than the general population and have some level of delay in most areas of learning. They do however have a relative strength in visual learning, and so programmes are being developed with this strength in mind. Last night was mostly about movement and developing physicial skills. It was encouraging to know that there is nothing a child with Down Syndrome can't or won't be able to do - it might just take more practice. Often about twice as much practice as other kids it would seem. But they get there! It was good to think about something other than leukaemia treatment for a bit and although I was very tired, was worth staying up for.

Well that was a bit of an all over the place update. Let's call it 'stream of consciousness'. Here's hoping my next post might be from home and that we get a couple of days together as a family before the next cycle begins....

Tuesday, June 29, 2010

Don't you just wish you could bottle up moments in your life so that long after the moment passes you could relive it again and again? I've felt that lots of times in life, particularly since having children - not necessarily in 'big' moments, but more in everyday ones that just fill your heart to bursting when you take the time to notice them - like little hands clasped around your neck, an unprompted act of kindness from a little one, unabashed excitement when you walk through the door, holding hands as you walk down the street.

With Lucy the feeling I want to bottle forever is when I cuddle her close and she just sinks into my chest, two fingers in her mouth, body completely relaxed. We often have a little dance around like this - cuddled together, her warmth and weight against me - a little taste of mum and baby heaven!

We have been so fortunate in this first chemo treatment that Lucy has been so well - only a couple of temperature spikes which have been easily managed with antibiotics, panadol and a few of the abovementioned cuddles!

She has been so well, and now it seems her blood levels are starting to recover too which is what the doctors are looking for! Everything is on the way up with the exception of haemoglobin, she's even on the board with neutrofils - 0.1 yesterday and 0.2 today! She is such a champion that if things continue to go well we may even be able to go home on Wednesday or Thursday for a few days, before returning to the hospital next week for a bone marrow biopsy to see how things are going in her bone marrow (hoping for no leukemia cells to be visible) and start her second round of treatment. Praise God!

On a less happy note, I noticed that Lucy's hair has started to fall out. Not great clumps, mostly just noticable in her cot. Another reminder that this is all really happening. Thankfully though, this side effect doesn't hurt, and her hair will grow back again (tho sometimes it comes back different to what it was like originally), and being a baldy baby isn't so bad!

We listened to "My Heart is Filled with Thankfulness" today - I feel like verse 2 should be my anthem -

My heart is filled with thankfulness
to Him who walks beside
who floods my weaknesses and strengths
and causes fear to fly
Whose every promise is enough
for every step I take
sustaining me with arms of love
and crowning me with grace".
I can't pretend that I know exactly why all this is happening to Lucy and our family, nor why others I know and love suffer in other ways. As I shared with my wonderful friend Nicola last night, I feel pretty much stipped bare by all that has happened for us in the last 6 years, but I do know that in all of it God is "enough" - his grace is sufficient, his mercies new every morning. I hope you know this all sufficient grace. Indeed I do not know anywhere else to go.
Will post some photos when I get my computer back, love to you all.

Saturday, June 26, 2010

Saturday 26 June

The last few days have seen Lucy's temperature yo-yo a bit - she's spiked several times, but each time has responded quickly to panadol and it seems the antibiotics are at least controlling whatever is going on. It seems like this is likely to be the way things go for a bit. Thankfully she doesn't seem to have any of the mouth ulcers or nausea that is very common with chemo. Interestingly, the last 2 days Lucy's platelet and white cell counts have increased a bit, which I will be keen to ask the doctors about tomorrow. I suppose it could mean that she is already starting to recover after the chemo which is hopefully a good sign! But, I am not holding my breath on this and will just wait and see what they say.

Tonight Adam & I are both home with the other girls while mum holds the fort at the hospital. We have enjoyed a fun family night at church and now relaxing with a cuppa on the couch. Today I spent a good bit of time with Jasmine and Lucy at the hospital which was fun, Jasmine enjoyed being my 'helper' with Lucy and playing with her in the cot. There was also a bit of impromptu dancing to the Wiggles much to Lucy's bewilderment! We also had a nice visit with Ken and Nae and the kids this morning which was great, even if they all got a bit soggy in the damp playground.

Sadly we seem to be on a run of things breaking since Lucy has been in hospital! The latest of these (following the power circuit in the kitchen, hot water system) is my laptop - the cord won't plug properly into the computer so it won't charge up which is very frustrating... so if I'm not able to update for a few days please forgive me, although I'll try.

Thanks for reading and praying and your kind thoughts and actions. We are continually overwhelmed by it all. Adam is doing a great job keeping the home front going. Thanks to all particularly for your help with the girls and all the wonderful meals that are stocking up our freezer!

Friday, June 25, 2010

Friday 25 June

Hi again, looks like Lucy's fever is back under control. She got up to 39 degreesn yesterday, but last night was back under 38 and this morning is at 36.2 so all good! She's still not quite herself and starting to look red around the eyes, but overall a lot happier than yesterday.

The girls did well with their blood tests. Maddie had a bit of a cry but Jasmine was a perfect patient! Not a worry or a tear in sight. She is definitely growing up, our nearly 5 year old. Of course all were appropriately rewarded with snakes and a knitted nanna teddy bear from the supply in pathology. They have to take HEAPS of blood for the test, so it actually took a while. I was very proud of both of them!

In the meantime lovely Anna gave Lucy a comforting cuddle - thanks for visiting Anna! Last night at home with the girls was lovely too (especially the yummy pie from Kirsty - thanks Kirsty, everyone loved it!), and Adam enjoyed nice cuddles here with Lucy. Jan from music therapy at Early Ed will be glad to know that the song Lucy responds to most at the moment from me when she's sad is the hello song we sing each week at music!

This running between the hospital and home is hard work and every now and then is getting the better of me. It seems almost mean that in their inability to express how they feel often the girls are pretty whingy and sad when I'm with them. Trying to be patient and focus on making time to do the things we always loved doing like reading and going to the park and jumping on the trampoline - some days are better than others, and sometimes I have to leave it to those into whose care I entrust our girls.

Trusting that ultimately this whole process will actually bind us closer to each other as a family and make us cling to God and his promises in Jesus as he binds us close to Him.

Thursday, June 24, 2010

Thursday 24 June

Hi all, just wanted to let you know that Lucy has spiked her first fever. She woke around 5am very unhappy (she's also been a bit constipated which is a common side effect of chemo) with a temperature of 38.4 degrees. They immediately take some blood to find out what is happening, and in the meantime start her on a triple dose of antibiotics just to cover all bases till they know exactly what kind of infection she might have. She's gone back to sleep now, so please pray that she's not too uncomfortable and can rest well.

Jasmine and Madeline are coming to the hospital today to have bloood tests for tissue typing tests - ie if there becomes a need for Lucy to have a bone marrow transplant a sibling stands the best chance of being a potential donor. Hopefully this wont be necessary, but we are all being tested just so we know. Please pray they cope alright with the blood test and that at least one of us will be a good match with Lucy!!

Tuesday, June 22, 2010

Feeling a bit frustrated today as we have been roomless nomads since 9am. It's now 2.30pm and we still don't have our room back after scheduled air conditioner maintenance for the fancy air conditioning system that is in this ward. Was only supposed to take between 1 and 3 hours. I know it's not the fault of the staff here, and of course it needs to be done for everyone's safety and welfare, but it's hard to relax when your stuff is loaded in Lucy's cot which is sitting in the hallway, and Lucy is confined to her pram and we have no space that is our own. We have been out for walks, had lunch with a friend and hung out in the parents room which until just now has always had others in it. When we first arrived noone was that keen on talking, but now I feel like I want to hide in the room so I don't have to talk to anyone for a while!

Lucy is still pretty happy, although neutrofils are down to 0.1 and haemoglobin down to 70, so she will have a blood transfusion this afternoon when we finally get back into our room.

She also acquired another nanna-rug this morning when I took a shower which she is modelling in the picture here. She was having great fun poking her fingers through the crochet holes. Very cute.

Some people have asked "what do you do with your days" type of questions. Kind of surprisingly there feels like there is a lot to do - feeding and caring for Lucy, giving her medication, doing her oral care, getting her to sleep, talking to nurses and doctors, so quite often I struggle to find time to have a shower and remember to eat myself. By the evenings I'm pretty tired so often just have some dinner, watch a little tv with not much interest, look at email or write here. Last night it was a privilege to see Nicola C and read the Bible and pray with her. Thanks so much Nic, it was a great encouragement!

Today I finally got to do a bit of embroidery while Lucy had a little sleep in the pram, which is on a screenprint from the gorgeous Prints Charming

Over the weekend I also enjoyed a bit of 'normal' time at home doing a bit of sewing and just hanging about with the girls. I think they enjoyed just being able to hang about as usual, knowing I was there pottering around with my fabric and sewing stuff as I sometimes do. Some time ago I cut up some old pillowcases that belonged to my grandmothers to make a quilt/picnic rug. I sewed together the top of the quilt on Sunday, and I am so looking forward to finishing it and taking it on it's first picnic. I'm loving the whole handmade thing, and re-using old things, especially things that belonged to people I love fills them with a whole extra layer of warmth and connection to the past. Maybe I'll show it to you when I get it finished, although I can't make any promises about when that might be!! So many people exclaim 'where do you find the time to make things?', but for me making things is fun and relaxing, I can do it at home in little bits as I have a spare half hour or when I decide to do it instead of cleaning the bathroom, and it makes me feel really good to complete something every now and then!

Well having said all that I'm feeling a good deal better though still not in our room. Thanks for all your prayers for the girls. Adam reported today that it feels like they are getting into the swing of things (the 'new normal'), and he spoke to Emma's school teacher who said Emma was going well at school after a few wobbly days when Lucy was first diagnosed. Maddie was a bit sad this morning, but brightened up quickly when she knew she was going to a friends place.

Ha! Just been told that our room is ready so we are off. Love to you all. Lx

Monday, June 21, 2010

Honest and Real

Photo by Sally Crosbie, couple of weeks ago...

Monday 21 June

I've been trying to put my finger on what is at the core of how the staff relate to us as parents and patients in the Camperdown Ward. Obviously everyone here has someone in their family who has childhood cancer in some form or other. As I've said before, it's a pretty full on place to be and work, and everyone is at different stages of their treatment. So far I have met people who like us are newly diagnosed and just starting treatment, and others who are several months down the track, and others who are a long way in, now preparing for bone marrow transplants.

The other night I had a sudden feeling of sadness (yes I looked in a book and read something I didn't want to read!) and was talking with one of the nurses who was kindly helping me to get Lucy to take some medicine. As she was talking, I realised what it was that so characterised the way that the staff deal with us – honesty. I was talking with her about what we had told the girls about Lucy's illness. As the days and weeks go on, we are gradually filling in the picture with some more details, particularly for Emma. The nurse mentioned that they (the staff) have a policy of absolute honesty. They don't hide things from us, and they don't want to hide things from the kids who are old enough to understand. She said that sometimes parents don't want to tell their kids exactly going on, particularly initially, but that it is their policy to be completely straight with everyone.

I think that honesty is what permeates every interaction I have with staff, and something I appreciate. There are no glib “she'll be right” comments, no silly jokes, no brushing off of any anxieties or the reality that kids here face life threatening illnesses. There's no talk of having to be positive all the time, or pretending that things aren't hard. No question is too silly or asked too many times. And they are always happy to talk. They don't mind you crying, but also join in a laugh. There is a healthy dose of realism about it all. Sometimes I want feel like I want people to lighten up and say “she'll be right, no big deal” but acutally that wont really be helpful for anyone. Instead their honesty and serious realism helps to instill confidence and trust.

And of course all the nurses LOVE Lucy and can't get enough of her lovely smiles.

Anyway, she's still going well – no temperatures yet (although a slight slight rise this afternoon), so still just waiting! Blood levels are continuing to fall - neutrofils down to 0.2 which means basically no immunity left. It feels like we are waiting for a big storm that is coming, but we just don't know quite how bad it will be. I kind of just want to get our first temperature or infection over with so I can see how it works.

Thanks so much to the McKerlies who played with Lucy and took her for a walk this afternoon so I could have a walk on my own at Parramatta Park, which was good for everyone I think!

Better go as the little miss is getting a bit cranky and wants to go to bed.

Sunday, June 20, 2010

Hi again, it's been a busy weekend with the family, and we even got some time to take a few photos together. The grounds of the hospital are lovely, and there is a particularly nice grassy place with lots of beautiful trees. We headed down there today with the fam to take some pics.

Lucy is still well, no temperatures in sight as of yet, still lots of smiles. The other girls are struggling a bit, especially in the evenings being sad about Lucy being in hospital - I took the 3 of them shopping this afternoon - something I NEVER do - but Emma needed shoes and I thought I'd get them a few little things and finish with a milk shake and some donuts. I'm feeling a new and strange desire to buy them stuff.... but in the end all they want is for me to be with them and Lucy to be well and at home too. Really that's what we all want.

I did do a big post about some other things I'd been thinking but something happened and it all got lost. I will do it again tomorrow as it's time for me to go to bed, so until then, goodnight!

Friday, June 18, 2010

The Pink or the White?

Friday, 18 June

Yesterday Lucy collected a few beanies. Apparently there is a lovely lady somewhere who spends lots of time knitting beanies and sends them in to the Children's Hospital,
with a special basket for the oncology ward. I went for a shower on Thursday morning and when I returned she was sporting the pink beanie. I popped out for a quick lunch with the lovely Jane and Joel and came back to her decked out in the white one, playing the bells with the music therapist! So thank you, lovely lady, wherever you are. They're also available to purchase in the Volunteers Shop for the bargain price of $1, so maybe stop and grab one if you come to visit!

Things are still going well with Lucy - she's pretty happy and at present fast asleep after entertaining this mornings visitors Tara, Kirsty and Uncle Dave. Thanks for coming everyone! It certainly makes the days pass more quickly.

Lucy's blood levels are dropping very low as a result of the chemo, which is totally normal and to be expected. She had a platelet transfusion this morning to help her along in that department. The main issue with dropping blood levels is the risk of infection. I think the normal level of things called neutrofils (not sure if that's how you spell it!) in your blood is between 4 and 8, and Lucy's are now down to 0.8. They should be down around 0 over the next day or so. Neutrofils are one of the things that particularly give immunity, so having no defence left puts her at high risk of infection, the first sign of which is a temperature. So far no sign of any temperature which is great.

I spent last night at home with the girls which was good, and this morning we continued our new ritual of reading lots of books tucked up together in our big bed. Often the evenings aren't leaving too much time for reading, so it is fun to do a bit more in the morning, although the rush to get ready after that isn't so fun. This morning's favourite (as far as I'm concerned) was Wilfred Gordon MacDonald Partridge. Gorgeous!

Last night I also managed to blow a fuse or something as all the power points in the kitchen and bedroom stopped working. Fabulous. Just what we need. Hopefully Adam will fix it tonight..... Luckily I had brain enough to find an extension cord and plug the fridge into a powerpoint in the dining room that was working. So if you happen to pop into our house and see the fridge plugged in like that, please don't turn it off!

I had a bit of a look at Adam's super spreadsheet last night, and was just a bit overwhelmed by the number of people who are helping us out. It is very humbing to ask for and accept help, and we are deeply deeply grateful to you all for any and every act of kindness and all your prayers. So thank you. Hopefully one day we will be in a position to help some of you out, but for now I am learning to humbly and gratefully accept your wonderful help. We are so thankful for you - our families, our friends, our church family at Naremburn Anglican Church and Adam's employers and colleagues. Much love to you all, from all of us Burkes.

Wednesday, June 16, 2010

Another beautiful day! Last night we were so encouraged that a group of guys from our church came out to Westmead to pray with Adam, and I even got to go to the second last night of my upholstery course. It was nice to have a little bit of time out, thinking about chairs and fabric and things like that which I love. The other girls together with some cousins were in the capable hands of Adam's mum and dad, who do so much for us and our family and for whom we are very very grateful. Hope you've survived the day ok with 4 and then 5 grandchildren after Emma came home from school!

Lucy and I have had lots of visitors today too - thanks for coming Michelle, Karin, Jenny and Richard and Molly. We love seeing you, especially while Lucy is feeling so well at the moment.

It has been a good couple of days having Lucy off the lines completely. She is still in top form, smiling up a storm and impressing everyone (especially the physio) with all her tricks! The photo is of Lucy today with some of her new friends (from some other special friends who have visited and the lady in the volunteer shop who couldn't resist!). I was talking to the oncology team nurse today and she said that what they are really looking out for is a temperature - which may indicate an infection, and can make you quite sick. This is very common and I get the feeling it is pretty much to be expected. Anyway, so far so good!

I also had a haircut today which made me feel like a bit less of a cavewoman with crazy hair, curtesy of the Cure our Kids group I mentioned before - how amazing is that? Feeling a bit glam for the first time in a while! Now I just need a good frock and a party to go to. Oh well, Masterchef, and a foldout bed will have to do.... oh yes, with some chocolate from my very healthy stash!

Chatting with another parent today I was reminded how truly blessed Adam and I are in our family with each other and our 4 beautiful girls. Just before Lucy was diagnosed with leukemia I started reading the book of 2 Corinthians in the Bible. I haven't been looking at it in great depth or anything (my brain just wont cope with that!) rather just trying to get the gist of what is going on and try and work out the main idea or verse. Whilst our path through life has seemed and seems pretty rocky at times, it was grounding to read that "it is God who makes both you and us stand firm in Christ. He annointed us, set his seal of ownership on us, and put his Spirit in our hearts as a deposit, guaranteeing what is to come" (2 Cor 1:21). What a relief to know it's not all up to me, and to know that EVERYTHING is secure in him whatever happens. Such safety and rest. A guaranteed future. Certainty in the midst of this uncertain life. I pray that you too know this certainty.

Tuesday, June 15, 2010

Hi again. What a gorgeous day! Lucy's first cycle of chemo has finished - above is a picture of the nurse disconnecting the lines while Lucy sits with our friend John. Today Lucy is line free! She even had the IV fluid line disconnected and we were able to go outside for a walk in the grounds with Lanthia and little Kara when they came to visit. It was so lovely to sit in the beautiful winter sun and feel the wind in our faces. Hopefully she will not need to be hooked up again for a bit - we just need to make sure she drinks enough. She's still perky and was happily playing in her cot practising the all important sitting! The other picture shows Lucy getting up on all 4's in the crawling position - another leap forward. For those who don't know, Down Syndrome affects a persons muscle tone, making gross motor skills more difficult to master. Lucy's main weakness is in her trunk, so getting the hang of sitting and getting up to crawling are big milestones. Yay! I think with all my children I have felt a sense of relief when they achieve new skills, but it's a little more concentrated with Lucy just cos I know she has to work that little bit harder.
It's amazing how different things look in the sunshine isn't it?! Last night I was a bit sad and anxious, deeply conscious of my weakness and weariness. But in God's kindness he reminded me that he is powerful, working in and through my weakness giving me his all sufficient grace (2 Cor 12:9). And Jesus tells us who are weary to come to him and he will give us rest. May you too find rest in his grace and power!

Monday, June 14, 2010

This afternoon I am home with Emma, Jasmine and Madeline. My heart feels heavy and slightly anxious every time I leave the hospital, and I feel the distance between my baby and me very keenly. It is hard to leave, but I need to, both for the other girls and myself and Adam needs time with Lucy too. I just always wonder if she will be different when I come back - will she feel ill, or have a sore mouth, or tired, or scared at what her body is doing that she doesn't understand? Will she want to breastfeed anymore? Apparently it's often about 7-10 days after the start of chemo that kids start to feel pretty bad. But, we are led to understand that some, particularly little bubba's, can just sail through with very little in the way of side effects. Praying that she will fall in the second group! We are at day 4 of chemo today (last day for this cycle), so day 7 is fast approaching. Originally I felt anxious about the prospect of the nausea and vomiting that chemo can cause, but it seems like that is able to be well controlled and Lucy hasn't shown any signs of that. The thing I'm most anxious about for her is the possibility of mouth ulcers which can be extremely painful and make eating and drinking very difficult. Please pray that she might be spared from this awful possibility.

It's really hard to know what to do about breastfeeding, and although everyone says not to stress about it, of course I am a bit. It may be that she weens herself which I suppose would be fine, but managing the juggle between the hospital and Lane Cove, it's tricky to keep doing feeds and maintain my supply. I think that the medical staff and dietitian probably feel that she will self ween soon, but I just want to be told what to do! Sadly though, there is no study or evidence about how beneficial breastmilk is to a 10 month old baby with leukemia and down syndrome. Not a very big class to sample! Anyway, will try not to stress, but it's something I feel like I can do for her, so I'm keen to try hard if it will be helpful, but expressing and all that is really hard work! I suppose after working hard at the beginning to establish feeding well, I'm loathe to give it up. Why is nothing simple???

On a happier note, just before Lucy's diagnosis we were very excited that she started sitting. We were keen to go and show off at Early Intervention, but sadly for the first time ever the week after she started this new trick her physio and early educator were off sick and so we never got to show them. Anyway, I've popped in a photo of her sitting so you know we weren't kidding!
The other photo is of all 4 girls together in March this year. I thought for those far away you might like to see the whole bunch of cheeky girls! The 3 big ones love their little Lucy very much, and Emma especially is missing her little room-mate. Please pray they will understand and be able to express how they are feeling about all this.
love Liz

Sunday, June 13, 2010

Hi there, here we are on day 3 of chemo, and things are going well so far. Lucy is still in great spirits and here you can see her totally loving some music therapy! She's a real gun on the drum and quite proficient at the shaker. She just loves listening to music and was quite entranced by the lovely music therapist's guitar and beautiful voice, accompanied by her sister Jasmine who does a pretty mean "Alice the Camel". Apparently Jasmine is also working on mime, which means you just move your mouth and don't sing - Lucy was not so inspired by that one!
We have been totally blown away by the amount of thought and work that has gone and continues to go into life on the oncology ward. As you can imagine, it's a pretty full on place to be and work, and there are lots of people who's job it is to make life a bit nicer for the kids and their families. "Cure our Kids" is an organisation that does lots in that way - they provide lots of snacks and stuff in the parents room, have parents afternoon teas, give care packages when you arrive, organise things like hairdressers and masssage therapists and craft mornings. All low key and no pressure events, but sincerely welcoming and supportive. We are thankful for them and their support.
In terms of entertainment, we have things like the music therapist, and Captain Starlight (who usually lives in the Starlight Express room but visits the kids in the wards too). There is also a play therapy room with lots of great toys and things to interest and amuse the kids. They have given us some lovely toys for Lucy to play with in her room as well.
We have had a good weekend, and last night Adam and I both got to stay at home together which was just lovely, thanks to my gorgeous mum who stayed the night with Lucy - thanks Mum!! I think one of the big challenges we face is getting time together as a couple, so those kind of opportunities are wonderful. As we don't know how things will look over these next few weeks, it's hard to plan time out or away - obviously if Lucy is unwell and unhappy I will want to be here, but it's important to maintain relationships with Adam and the other girls too. I am learning to accept that at every point someone will be missing out, and just to try and make the best of what we can do. In that vein Adam has just sent me a mega spreadsheet detailing our day to day movements with the other girls - I'm a bit scared to look! Adam is in super-task mode - quite helpful for me who goes into space cadet mode re tasks when stressed. Just pray we'd communicate well about what's happening so there isn't tension over who is doing what when and where!
So far I think the other girls are travelling alright. The social worker has suggested trying to do something with them individually (just reading or talking or something simple, even when we are all hanging out together). I tried to do this a bit on Saturday, and will see them again tomorrow (yay for the long weekend!) and hopefully their little love tanks have been filled up a bit..... thank God for Skype and mobile phones and all that stuff! Please keep praying for them and us as we manage and help them manage how they're feeling.
Must go, Lucy is awake! Thanks for your support, love Liz

Friday, June 11, 2010

Diagnosis and Treatment

Here we are on Thursday, with Lucy just starting her chemotherapy.

Before we get to that, I figure that you might like to know some details about Lucy's diagnosis.

There are 2 main types of leukemia - she has the type known as Acute Myeloid Leukemia (and also Myelodysplasia which is some related thing I don't really understand yet!) and it's commonly called AML (the other one is ALL which is Acute Lympho-something Leukemia).

I think that in the general population ALL is the more common kind, and generally the "better" kind of leukemia to have. However, for little people with Down Syndrome, AML is more common and better. The drug protocol we have been given outlining the course of chemo Lucy will have says "since the early 1990's, it has been recognised that Down Syndrome children with AML have extremely high event-free survival rates and lower relapse rates compared with non-DS children with AML." It seems that the 'cure' rate is as high as 90% - at least 80% if not 90%, which is GREAT news for Lucy and us. The doctors are all very very positive, and are aiming for cure with Lucy. Of course there are no guarantees, but the prognosis at this stage is extremely positive. It's a funny thing that down syndrome in some ways pre-disposes you to leukemia, but in another way seems to help in responding to treatment.

Lots of people have also asked how we found out about Lucy's leukemia.
Some of you may know or remember that when she was born she had a blood disorder that was a kind of passing leukemia. It was, in it's nature, passing, and it did go away as expected. The doctors told us that having had that disorder, Lucy would have a chance of developing leukemia of about 30%. They told us particularly to look out for little red spots on Lucy's skin, which would be a sign of low blood counts.

About 2 months ago, I noticed Lucy had some red spots on her legs. She had a cold, and although a blood test showed her platelets were low, all the other levels in her blood were fine, and the haemetologist was pretty sure the drop in platelets was caused by the virus. However, Lucy recovered from the virus, but her platelet levels didn't improve. They seemed stable, just low, and we were told to just have another blood test in a month. That month came up last Friday, and I took her along for the blood test. Later that day I got that phone call no parent wants to get, when I was told things weren't looking good, and that the haemetologist was looking into it further. Another half an hour, and I was asked to bring Lucy straight to emergency at Westmead Children's Hospital, and it was highly likely that she had leukemia.

I drove out here in the pouring rain, crying and praying all the way. It felt like one of those awful scenes in movies when things are going badly and the rain is bucketing down. Once we got to emergency, a bone biopsy confirmed the leukemia diagnosis. It was originally called a "pre-leukemic phase" as the percentage of leukemia cells was not high enough to call fully blown leukemia, but the subsequent diagnosis of myelodysplasia meant they stopped calling it 'pre' and just call it leukemia now.

Not much happened over the weekend - as the number of leukemia cells was low, there wasn't an urgent need to rush into treatment immediately. We even got to go home for a bit on Monday and the whole day on Tuesday. On Wednesday Lucy had an operation to put in a Central Line, have a Lumbar Puncture and further bone biopsy. The central line is a tube that is inserted into a major vein and through which the chemo can be administered, fluids maintained, and blood can be drawn. Hopefully the one line will stay in for her entire treatment which is probably about 6 or 7 months.

Chemotherapy started on Thursday, and in this first cycle she will have 4 days of continuous treatment thru the line. Then she will have at least 24 days recovery - which is when, as far as I understand, she could start feeling really revolting and she will be closely monitored for infections and other side effects. For this cycle, she will be in hospital for the whole time. Once she starts recovering, the second cycle of treatment will start. Each treatment is different in terms of how long the drug is administered etc. Depending how she goes, we may be able to go home after that second cycle and then be treated through the oncology clinic.

Alright, enough for now. We have certainly reached saturation point with information at various points and I'm sure that's enough for you! Hope that helps in understanding where things are at.

I just met another family whose 6 year old son has just been diagnosed with ALL. Looking very wiped out, no doubt just as we did. I've been feeling a lot better and stronger the last day or two - so thanks for your words of encouragement, your support and your prayers!


Confronted with my first post it's a little hard to know where to start. I feel like I should all of a sudden be endowed with the ability to think of creative and witty titles and and write with flair and intelligent vocabulary. Let me say right now, up front, that even at my best I don't have those abilities, and at the moment, I'm struggling to string a sentence together. But of course my aim here is not to amuse but to share and inform.

As you know, our lives have recently been rocked by Lucy Joy's diagnosis of leukemia. I will attempt in this blog to fill you in a little on how things are going, things that we are doing, thinking, struggling with or triumphing through, things you can pray for and be thankful for. Thank you for coming on this journey with us, it is wonderful and overwhelming to know all the support we are receiving, and we want to be able to communicate with you well. Please forgive me for when I'm not good at keeping you up to date, but please keep sending messages, doing whatever your circumstances allows you to do - listening, talking, hugging, crying, laughing, cooking, playing with children or praying. We appreciate all these things (and many others too!) more than we can say.
This picture was taken on Tuesday, the day before we came to hospital to start treatment. What a treasure!
"Cast all your anxiety on Him for He cares for you" 1 Peter 5:7